Tag Archives: stress free travelling

Home or away?

With a trip to London for M’s GOSH appointment an unavoidable part of the Easter holidays, we decided to make the best of it and spend a few days there on our very own mini city-break. In preparation we spent one Sunday afternoon leafing through the pages of Mike’s “501 Days Out” book, looking for inspiration for what we could do during our stay and G and M quickly filled a sheet of A4 with their suggestions. It was left to Mike and me to make the final cut and hone our plans and, despite desperate requests for Legoland Windsor and Chessington World of Adventures, we decided to stick to those attractions within a reasonable distance of where we’d be staying and drew up a list that felt exhausting just looking at it.

This epic event was our first overnight stay away from home since M had his tube back in December and I drew up ~~thousands~~…~~hundreds~~…well one very long list of everything I needed to do in preparation. My first job, once our trains were booked, was to find somewhere to stay that would meet all of our requirements. Usually we choose to stay in one of the Premier Inn hotels on the south-side of the Thames, be it near the London Eye or closer to Southwark Cathedral and find them a great base for walking, or using the underground, to almost anywhere we’re intending to visit. Unfortunately, leaving the actual booking to a little late in the day meant that none of our usual suspects of hotels was available for the 3 nights we were planning to stay and instead I had to search for a suitable alternative. Whilst browsing frantically looking for a room at ~~the~~….an….any inn, I came across the option of a serviced apartment and things suddenly started to fall into place.

We chose a one-bed apartment in East Aldgate, not too far from the Tower of London and easy walking distance from the nearest tube station. The benefits seemed huge:

with a separate bedroom and pull-out bed in the living area, G would be able to go to sleep at a reasonable time, whilst M played his usual night-owl games
there would be plenty of space to store all of M’s medical gear as well as the supply of safe foods for both him and G that we would take with us
having a kitchen meant we could easily prepare M’s feeds, make packed lunches and even cook dinner, thereby covering every possible meal-time option we might face
it also meant we would have a fridge to keep cooked meats, cheese for G and M’s feeds in overnight without the need to request one beforehand and then keeping our fingers crossed it would be available when we checked in
finally, we would have a quiet place to retreat to when things got too much or the children needed some down time in the middle of the day

So it was an easy decision to get that apartment booked. The days flew past until finally I had no choice but to tackle the task of packing for our trip. By the time I had everything I needed for M in the case, plus our supply of safe foods for both G and M, I was beginning to wonder whether I’d have room for any of the clothes the 4 of us would need for 4 days in London. With some canny packing and careful choices about exactly what was necessary, I just about squeezed everything in and we were ready for our next big adventure.

Kracklecorn? What’s Kracklecorn?

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Courtesy of gruffalo.com

Kracklecorn! Why, didn’t you know?

(with apologies to Julia Donaldson and the Gruffalo)

No? Well neither did I until we travelled to London for M’s September GOSH appointment. I had left Mike to keep an eye on the children whilst I fought my way to the train’s buffet car for a much-needed injection of caffeine. As I waited for my latte to be made, I spotted an attractive looking blue and white striped bag hidden amongst the more familiar packs of crisps and bars of chocolate and, intrigued as to what it was, I asked if I could look at the packet and ran my experienced eye over the extremely short list of ingredients. I was thrilled to discover that the four ingredients (maize corn, rapeseed oil, cane sugar and sea salt) were all 100% safe for both G and M and naturally snapped up a bag of Kracklecorn for them to taste, with fingers tightly crossed that I might just have found another M-friendly snack for them to enjoy.

I think they broke records in devouring this popcorn treat and Mike and I barely managed to sneak even the tiniest of morsels to taste ourselves. I’m not a fan of salted popcorn usually, but the balance of the not-too-sweet and the not-too-salty was spot on and even I found little to fault with this snack. As the children begged for more, I had visions of having to buy out all the stock on the train and heave my haul around London, so imagine my delight – and Mike’s relief – when I discovered that it is readily available at most Tesco stores, including, thank goodness, those a stone’s throw from our front door.

For those of you yet to discover this brand, Kracklecorn is hand-made by Portlebay Popcorn in their factory, lovingly known as “The Poppery” in Devon and is available in a huge range of flavours, the like of which I’ve never seen before. Unfortunately, the “Classic” sweet and salty is the only one suitable for my pair, but I can assure you that the “Lemon Sherbet” and “Crispy Bacon and Maple Syrup” flavours are equally delicious and unequivocally moreish – a fact that Mike cannot dispute as we fought over who would finish the bag of lemon sherbet popcorn on Saturday night.

I contacted Portlebay Popcorn to ask for some samples to review and when this parcel arrived on our doorstep, G and M thought all their Christmases had come at once. I asked for their thoughts as they munched their way through yet another bag and the comments “delicious“, “amazing” and “10/10” were just about audible as they crammed more popcorn in. Despite the best efforts of 2 small children in the 7Y2D household in the run up to Christmas, we still have several packs of Portlebay Popcorn waiting to be enjoyed and the question has been what to do with them all as G has been left to devour them on her own whilst M is on his elemental diet. I found the solution today.

Today is the perfect day to be offering my very first blog competition as it is, believe it or not, National Popcorn Day, though admittedly this is celebrated mostly in the USA where they consume an unbelievable quantity of this sweet treat each year. Thanks to the generosity of Portlebay, I am offering 2 lovely readers the opportunity to win 3 bags each of the “Classic” Kracklecorn to enjoy. Simply enter via the link and I wish you all the very best of luck and happy munching!

a Rafflecopter giveaway

*Disclaimer – We were sent packs of Portlebay Popcorn for the purpose of an independent review and the views expressed are entirely my own and those of G and M.

Just when you thought it was going to be easy…

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…something happens that shows you that it really doesn’t pay to be complacent, especially when it comes to children with complex medical needs. The reason for my most recent angst? The whole ‘flu vaccination thing! Yes, you probably read my blog post over a month ago, where I discussed the decision process we were going through regarding M and the ‘flu jab, and almost definitely concluded by the end that everything was set firmly in place. Having visited our new GP, I certainly felt that we had agreed what was best suited to M’s needs and was now just waiting for the confirmation phone-call and a date for my diary.

You’ll have guessed by now that it hasn’t been that easy and whilst that doesn’t come as any surprise to me when it concerns my youngest, the complexities of getting the situation sorted came at a time when, to be perfectly honest, I really didn’t need the added aggravation. It all started when I phoned the surgery to book the appointment. The receptionist needed to discuss which clinic to book M into because he was having the injection and not the nasal spray and so referred him on to the practice nurse, with a promise she’d call me back. 10 days and 3 phone-calls later, I was still waiting for the practice nurse to confirm which clinic M needed to attend. Oh, and there was the added problem – or so I was told – that there wasn’t enough child vaccines in our health centre, so we would have to wait for those to arrive before I could make a definite appointment.

This is definitely a t-shirt us #EGID parents need!

The string of events that followed are like the plot of a bad 1980s sitcom as we got bounced from one local medical establishment to the next. The first problem was that the no egg vaccine is not licensed for use in under-18s and so the nurse wasn’t happy to give it to M, especially as he’s never had the vaccination before. She was keen to discuss the situation further with one of our local hospitals and so I agreed to wait. Next, I had a message telling me that the hospital would give M the injection, so that he could be monitored and could I confirm that I was happy for my contact details to be passed onto the appropriate administrator to arrange that appointment. Needless to say, I confirmed as soon as I could and then sat waiting for the next installment in this latest saga.

Three days later, a copy letter arrived in the post from the community paediatrician, who has met M once, knows very little about him and just confirmed that he could have the ‘flu vaccination unless Mike and I knew of any reasons why he shouldn’t have it. Er, no – after all, we’re the ones requesting he be given the damned thing. A week after that, another phone-call from our local health centre, advising me that the local hospital won’t give M the injection because his 2009 blood tests didn’t show any sign of an egg allergy. WHAT?!

Now, don’t get me wrong, M does not suffer an anaphylactic reaction to egg, rather a delayed non-IGE one, so I can understand that they don’t think it necessary to be monitoring him on the ward; but blood tests from 5 years ago are hardly a good basis for any medical decisions made in my opinion. In the 5 years since those blood tests were carried out, he has been treated by GOSH, had a diagnosis of EGID and we have established that he struggles with several food allergies that, because of the very nature of his reactions, will never show up in the standard blood tests.

The next part of the conversation however, really took the biscuit for me, though I don’t blame the poor receptionist tasked with phoning me to make the relevant arrangements:

“As his blood tests were negative, the hospital have said he can have the ‘flu vaccine here, so I can book him into this Saturday’s clinic for the nasal spray.”

“Um, no he can’t have the nasal spray because of his egg allergy and the nature of his underlying chronic illness.”

“Oh, well the hospital said he could have it as he doesn’t suffer an anaphylactic reaction, so they want him to have the nasal spray here.”

“Well,” – (a somewhat hysterical tone starts to creep into my voice) – “Great Ormond Street have said he needs to have the injection, so I think we’ll follow their advice as they understand his medical needs.”

“Right, so you want him to have the injection?” – (she’s now slightly perplexed) – “Well, I’ll have to check which clinic I need to book him into. I’ll call you back.”

womenonthebusinessstage.co.uk

Have you ever felt like you’re going in circles? Five weeks on from my original GP appointment and I was right back where I started and M still hadn’t had the ‘flu vaccine. I was even beginning to question just how important it is for him to have it, given he hasn’t had it before, but GOSH had recommended it as a good idea for him and I wasn’t prepared to give up at the first hurdle. Fortunately, the receptionist was as good as her word, has booked him in for appointment after school one day next week and has left a note on the system for the nurse at that clinic to review his medical history before he has the injection. Of course, I’m trying not to panic that she might take one look at his notes and refuse to give it to him, but at least we’re making steps in the right direction at long last.

Our fabulous Florida photo round-up

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A week filled with appointments right, left and centre has left me with little time to write a full blog-post. As we process all that’s been said this week, what better way to keep smiling than a photo round-up of our fab time in the Florida sun:

Flying high in St Petes

Star Tours

G, M & Eeyore

Afternoon tea at the Grand Floridian

Who’s the leader of the club/

Alice & the Mad Hatter

Parade magic

Lost boys – but where’s Peter Pan?

PhotoPass_Visiting_Magic_Kingdom_7033012070

Darth Vader

Photo taken by M

Clipper

1458655_800725413290492_2694048479460387307_n

Yep, we even got to go to the Kennedy Space Centre

Relaxing at Pirates Cove mini-golf

Banyan tree

Lego Ford

Top Tips for Theme Parks (and some amazing US foods!)

Dolphins, Killer Whales and all things underwater

Not a Universal success

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I wouldn’t blame you for thinking that we did nothing but Disney whilst on our hols, however we did venture to some of the other theme parks and attractions during our 2 week sojurn in Orlando. G and M were particularly excited about the prospect of visiting Universal Studios, or more accurately, the “Wizarding World of Harry Potter“. My enthusiasm was not so great, particularly given my poor experiences to date in trying to get hold of some, or indeed any, information about visiting the parks with my food-allergy duo. I found the website difficult to navigate and the information available on it less than informative. My first e-mail to them went unanswered and if it hadn’t been that both M and G were desperate to visit, I honestly think I might well have given up at that point. However, I eventually tracked down a helpful customer services rep, who phoned me in the UK and discussed our needs at length. She reassured me that they catered for food allergies and that we should encounter no problems when eating in the parks. I was interested in booking the Character breakfast at La Bamba cafe so that the children could meet a Minion and once again I was assured that we could mix and match the breakfast options to get a meal that was safe for both G and M. Taking it on trust, I booked the breakfast and pencilled in 2 days at Universal on our somewhat hectic schedule.

Mike imitating both Dave Minion and Gru at the character breakfast!

Our first day started well as we arrived in glorious sunshine and headed directly to Diagon Alley carrying a rucksack prudently packed to the gills with M-friendly snacks. Our first view of Diagon Alley was impressive with a multitude of shops selling everything a young wizard could want as well as the fire-breathing dragon atop Gringotts Bank. We headed into a nearby wand shop for both children to chose a wand to buy and then ventured off on a magical tour, following the map to find the location of spells for M to cast using his interactive Dumbledore wand. I even dared to sample a pint of Butterbeer as requested by my dear friend, F, but have to confess it’ll be the first and last time I do that as the drink was just too sweet for any of the family to enjoy. Disappointingly, as jaw-dropping as the “set” was, there really wasn’t enough to appeal to the younger age groups which we all found surprising. Nearly all the rides, apart from the utterly amazing Hogwarts Express that carried us between the 2 halves of the Harry Potter experience, were roller-coasters or simulators that were just too big and scary for my nervous pair.

I was also disappointed by just how commercial it all felt, especially the “unique interactive experience” at Ollivanders shop in Hogsmeade, which promised far more than it delivered. Just 2 children were selected from the crowd in the shop to participate in the amazing experience of finding out which wand was to be theirs; after all, as we all know “..the wand chooses the wizard…” (JK Rowling: Harry Potter and the Philosopher’s Stone). Not only was every other child in the audience disappointed not to be part of the action, but – call me a cynic – I don’t imagine many parents found it easy to then say no when their little darlings wanted to buy the wand that had chosen them in such dramatic fashion.

By lunchtime we had seen and experienced all that the Wizarding World had to offer and headed off in search of some food for our group. We left Hogsmeade, where the food queues were out of the door, bypassed yet another hard-sell when the magic show we had been ushered into turned out to be little more than an opportunity to buy 4 tricks for the price of 2 and ended up at the street markets of the Lost Continent. We stopped at what seemed a likely place as it sold hot dogs, something we had found was inevitably safe at all of the Disney parks and I queued to speak to what was possibly the most unhelpful server I have ever met and someone definitely not suited to a customer service role. She gazed blankly at me when I asked for allergy information about their food options and struggled to understand even the simplest of requests:

“Could I please have 2 hot dogs without the bread-rolls as I have 2 children with multiple food allergies?”

“What?”

“Could I have 2 hot dogs without the buns?”

“You mean you don’t want the buns?”

“No, just the sausages…the meat”

“You don’t want the buns?”

“No”

“Just the dog?”

“Yes”

“But no bun?”

“No. Just. The. Dog.”

“So, you don’t want the bun, just the dog?”

“Yes”

“Oh. I’ll have to check with my manager if we can do that.”

Our exchange on whether I could get fruit or vegetables as an alternative side to the bun and the fries went in a similar vein. I gave up any hope of intelligent discussion at that point and G and M ended up with a hot dog each – “just” the dog: no bun, no fries, no fruit and no veg, all for the princely sum of $15 plus taxes. Yes, that’s right, £10 for 2 sausages that barely touched the sides going down. Mike and my Mum picked out some safe looking bits of salad from their lunches, we bought a packet of crisps for G (another £2.50 there) and fed M from our own plentiful supplies, much of which had been got from Disney.

I’d love to say our experience got better, but it really didn’t. In “The Cat in the Hat” area, a place filled with lovely rides inspired by Dr Seuss books and enjoyed by us all, we came across a bakery selling the most amazing-looking cakes, biscuits and sweets guaranteed to tantalise the tastebuds. Some of them were gluten-free, but none of the them catered for those with more complex allergies like G and M and we left empty-handed. I had toyed with the idea of eating dinner in one of the restaurants at Citywalk, but again, of the 4 I had contacted ahead of our visit, only 1 came back to confirm they could probably cater for M’s food needs. Maybe we’d been spoilt by our experiences in Disney, but Universal was a real disappointment and if it hadn’t been for our prepaid and booked Character breakfast for our second day there, I doubt we’d have bothered going back.

Raglan Road Irish Pub

G & M’s Top Disney Picks

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Having written my last blog post, I asked G and M to name their favourite meal whilst we were at Disneyworld. It came as no surprise to me that neither could narrow it down to just one meal, so instead they each listed their top 3 (which were exactly the same) and I thought I’d share them with you.

Afternoon tea at Citricio’s Lounge – Grand Floridian

Our afternoon tea at the Grand Floridian was a surprise for my Mum, who is celebrating a special birthday in September and was one that the children and I had successfully kept from her for months. We arrived at the hotel via monorail from the Magic Kingdom and it was only when I suggested we got off there that my Mum had any idea of what was going on. The children both opted to have the “Mrs Potts Tea” and were treated to 3 tapioca rolls filled with turkey, ham and strawberry jam, followed by a small plate filled with a variety of allergy-friendly cookies and fresh fruit. M chose to have apple juice to drink, whilst G had water and both were served from their own individual tea-pots, which they loved and took the chance to pour more to drink at every opportunity. We were well looked after by Chris, the on-duty manager and David, our waiter and the children both rated this as their most favourite meal of all.

Mickey waffles – Tusker House (Animal Kingdom), The Mara (Jambo House) and Chef Mickeys (Contemporary Resort)

We didn’t order these for our first breakfast at Disney, but instead waited until the character breakfast we’d booked at Tusker House. Chef Renee confirmed that they were gluten-, dairy-, egg- and soya-free and only contained a small amount of potato starch. The kids were over-the-moon to be given the opportunity to eat such a treat and I don’t think I’ve ever seen M consume so much for his breakfast. They ate these marvellous Mickey waffles with lashings of maple syrup and strips of crispy bacon. Elsewhere they were also given fresh berries to enjoy alongside them. I know G liked them, despite her assertions the other day that perhaps they weren’t in her top 3: after all, repeated requests for seconds and 1 breakfast of 5 Mickey waffles would seem to disapprove her statement!

Hoop-dee-doo Musical Revue – Wilderness Lodge

This was my wildcard dinner reservation, but one I’m really glad I booked as both children had a brilliant time and loved every minute of the meal. This is a dinner show, where the audience is entertained by the antics and songs of the 6 performers both on stage and with some audience participation, whilst enjoying an all-you-can eat dinner of fried chicken, BBQ ribs, green salad, baked beans, mashed potato, corn and cornbread. M and G were treated to plates overflowing with food, including grilled chicken, ribs, corn, tapioca rolls and a baked potato for G. Instead of the strawberry shortcake offered for dessert, they were given coconut ice-cream, strawberries and allergy-friendly chocolate cookies. Not only was the food delicious, but they clapped and cheered along with the show and took the opportunity to play the washboard and dance around the dining room.

Virgin Fantastic!

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The time had finally come and the night before we flew, I sent tweets to both Virgin Holidays and Virgin Atlantic to issue my challenge to meet my holiday expectations and both accepted it immediately.

https://twitter.com/VirginHolidays/status/494057894611267585

First up was Virgin Holidays and their Gatwick V-room. As I wrote back at the end of July, I had been promised a supply of rice milk for M as well as some suitable options for his breakfast and I was keen to see just what would be waiting when we got there. Upon arrival, we met the fantastic Dominic, who knew all about M and our request for rice milk. As soon as we found a table for breakfast, he brought the milk over and then spent some time discussing all of M’s allergies and what food they had on offer that might suit him. I was impressed to learn that they stock B-free bread and although it contains egg and therefore isn’t suitable for M, G snapped up the opportunity to have 2 slices of toast as part of her breakfast. Both children also had some cereal with the rice milk and there was fresh fruit and smoothies available for them too. I was hugely impressed with Dominic’s attitude throughout our time there and at no point felt that we were an inconvenience to any of the V-room staff. Even better, we were able to take the remainder of the carton onto our flight with us, which meant we could go on our holiday knowing M had a limited supply of safe milk to hand.

@7yrstodiagnosis Let us know how it goes 🙂 ^H

— virginatlantic (@VirginAtlantic) July 29, 2014

It was then on to our plane and it all started well. The check-in staff had confirmed that the special request meal had been noted on our booking and the cabin crew provided us with a ready supply of ice to keep the cool-bag of medicines cold for the 9+hours we’d be in the air. I was equally impressed that they offered to place our ice packs in their on-board freezer to ensure that we could keep everything cool until we reached our final destination in Orlando. Eventually it was time for the meal and here we hit our first rocky point. I had requested a gluten-free meal for G which quickly turned up, but there was no sign of the requested meal for M. The cabin crew searched high and low for it, but couldn’t find it and we were left with the option of whatever fruit they could get their hands on plus the snacks I had packed to keep M’s appetite filled. Just as I was mentally drafting a letter of complaint to Virgin Atlantic expressing my disappointment at being let down in such dramatic fashion, our air stewardess hurried up with a tray of food and an apology on her lips. The confusion had arisen for 2 reasons: 1) the meal had been prepared with G’s name on it rather than M’s and 2) it had been assigned to the seat number of another passenger who had also requested a special meal and the names had not been cross-checked to make sure everything was right.

Disaster was averted, but only just. The meal prepared was exactly what I had asked for – plain grilled chicken with rice and vegetables and a fantastic fresh fruit salad for dessert – and M tucked in with gusto. We were lucky that the other passenger had not started eating the meal before the mistake was identified and I’m glad to say that our return flight was not plagued with the same problem, although it still appeared that G had 2 meals (both the gluten-free and special request meals being assigned to her name), whilst M had none! I hadn’t considered that a smaller snack would also be provided on the flight and was delighted Virgin Atlantic had thought further ahead than I had and provided another delicous fresh fruit platter for M to enjoy safely.

Gold stars all round!

I have been really impressed with how well both branches of the Virgin family accommodated our needs and requests on the flights and wouldn’t hesitate to recommend them to anyone going on holiday with special medical needs. We didn’t run into any unexpected problems with our travel arrangements and I will definitely consider travelling with them again.

7 years to diagnosis

Searching for an answer